June 2015
Newsletter

Dear Friends,

Good news on the opioid availability front!

When the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India was amended by the Indian Parliament in February 2014, many expected immediate results, but there were procedural barriers. Finally, we are glad to report that the state NDPS rules have been notified. All the states in India now have a simple procedure, which essentially is a modification of the Kerala rules which have been in existence since 1999. Contrary to the Kerala rules, the present notification extends to all formations of morphine, fentanyl and some other opioids.

Would this mean immediate improvement in access to pain relief in India? We fear not. There are two major hurdles before us: the first is education of professionals in pain management and the second is ensuring that all the states implement the new rules without bringing in procedural complications.

We have a lot of work to do!

On 18th May 2015, Aruna Shanbaug left us. Brutally raped and strangled at the age of 25 by a hospital attendant, Aruna Shanbaug had a vegetative existence for 42 years more. The fact that she lived might seem at one glance to be a victory for medical science, but if so, it was a victory of empty, heartless science.

Her assailant walked out of prison after seven years, a free man. Aruna Shanbaug continued her life of rigorous imprisonment in the hospital, the height of which is obvious when we are told that she died on a ventilator. Today, as she leaves us, we still do not have a law covering end-of-life decisions or covering withdrawal of life support. Medical science is confused, not having bothered to study the issue at depth, leaving the judiciary also confused, making them believe that withdrawal of artificial life support is a form of euthanasia.

Her life for the last 42 years would have forced us into action if our society had a conscience.

Rest in peace, Aruna.

The death of Aruna Shanbaug has brought into focus the urgent need for clarity from the Supreme Court on the issue of withholding or withdrawing futile medical treatment. While passing a judgement related to Aruna Shanbagh, the Supreme Court seems to have created some confusion by referring to “passive euthanasia”. Dr Nagesh Simha, President of the Indian Association of Palliative Care, tells Times of India how it is ethical to withhold or withdraw futile medical intervention and the urgent need for clarity in the law.

We would like to add that a large number of patients being admitted to Intensive Care Unit eventually may have to be withdrawn from the life support. This process can be inhuman, without the introduction of palliative care at the right time. In fact, all principles of palliative care must be applied during intensive care, too. While life-saving measures are in place, comfort measures should be concurrently given so that the patient does not recollect the period of intensive care with terror.

Eventually, when the time comes, weaning from artificial life support measures should also be associated with palliative care principles.

The 25th of May, 2015 saw Palais des Nations in Geneva focussing on the problems of children with life-limiting diseases, during a side event organized by ICPCN with several collaborating organizations.

The story of the child who was killed by his parents who then committed suicide because they “could no longer bear to see the suffering of their son”, at Kanhangad in Kerala came under discussion as an example of how children suffer.

Renowned speakers from different parts of the globe, including Joan Marston, the Chief Executive of International Children’s Palliative Care Network (ICPCN), spoke on the occasion. The participants had a pleasant surprise when Dr Margaret Chan, the Director General of World Health Organization, dropped in at the event and addressed the audience. In the picture, you can see Mr. Stephen Connor, moderating the session.

Pallium India was proud to be a participant at this event.

An article in the Huffington Post of 21 May 2015 brings focus on the need for morphine in India and the rest of the world. Excellent graphic representation of the need and of the current sad situation.

The good news is that the World Health Organization has set up an Access to Controlled Medicines program that aims to spend $55 million over the course of six years to overcome the barriers to access to pain relief.

The hall was full of palliative care volunteers at Kannur. It was an annual get-together at the state level. The discussion was lively and had a range of topics like quality of care, interaction between government system and non-government organizations, palliative care for children, mental health and palliative care, and so on.

Palliative care workers from round the globe, come and experience this positive energy. More than 30,000 volunteers in Kerala are re-building the social capital.

The Lancet Volume 385 of May 23, 2015 carries an article by Dinesh C. Sharma about health spending in India, which makes us wonder whether we have forgotten our kitchen table wisdom that health is more important than wealth.

India’s health spending has always been one of the lowest in the world. Compared to 15-17% of GDP spent by the U.S. government on health and compared to 5%, which is the lowest among most civilized countries, India stands out with its abysmally low health spending of less than 1.2%. During the last decade, health spending had slowly crawled up from 1.1% to nearly 1.2%, but the newly declared health policy has slashed it by 15%.

One of the major achievements in the last decade was the spending by the Government of India through the National Rural Health Mission (NRHM) to improve health services, particularly with a focus on infant and maternal mortality. The availability of medicines had improved in government hospitals, including primary health centres. For the first time, diabetics and hypertensives from the poorer strata of the society were getting essential medicines free. There were plenty of imperfections, but certainly there was a trend towards improvement. The proposed cut in health spending by 15% does seem tragic. According to the government, under a new tax-sharing formula, states will get more funds and they will spend more on health. But the Lancet quotes experts who expect that the maximum that the state may get out of such tax-sharing is 0.7% of GDP, while some states will actually lose out. The National AIDS Control Program, which had succeeded in keeping prevalence below 1% and in improving ART also now stands under threat.

The impact on palliative care access is predictable. Though the government of India had framed the National Program of Palliative Care (NPPC) in 2012, it had been able to provide only about 2% of the originally proposed budget for the purpose. Now, even that stands threatened.

Nazeem Beegum’s book, My Mother Did Not Go Bald, is a memoir of her experiences when her mother went through cancer and eventually died. The Hindu, in its review, writes, “she subtly touches upon the alienation of senior citizens, the breaking up for family ties in modern Kerala, the emotional turmoil of caring for terminally ill patients and the commercialisation of health care sector that tends to see each patient as just another ‘case’. Nazeem’s candid speak does not spare her family or herself. Disease and death are events that touch every family at some point or other.”

It would be more than worth a read – a sort of preparation for life. All the profit from her book came to Pallium India to support patient care.

Nazeem writes to say about the next edition, which is available as Print on Demand:

“My book is proof read again to remove printing devils and mistakes. DC Books [Expressions] is ready to print copies of My Mother Did Not Go Bald on your demand.”

Interested readers are kindly requested to order the book through DC Books – Online Bookstore. Click here to order the book and support the efforts of Dr Rajagopal and Pallium India to raise awareness about palliative care. The book is also available on Amazon Kindle.

See that little mountain of medical supplies – Lymphedema sleeves, bandages, stethoscopes and so on? They are donated with love by someone who cares.

Dr Erin Springer of Yale New Haven Hospital was planning to visit Pallium India; but had a visa problem and could not make it. She decided to contribute anyway. She collected medical supplies – things that we really need over here – from various sources, put them together and send them across.

Thank you very much, Erin. We are very grateful for the supplies. Mr Bruce Davis from UK and Savitri Waney Trust are helping us expand our Lymphedema services. A lot of agonising suffering with Lymphedema following breast surgery for cancer and due to other reasons, usually in the lower limb, are not at all uncommon in our country and we would like not only to establish the service, but also to make it visible to all palliative care centres.

When we are done, another significant chunk of suffering, we hope, will vanish from our society.

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.

Telephone: +91-9746745497 or E-mail: info@palliumindia.org

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

“With the prevalence of chronic killer diseases like cancer and large number of bed-ridden people, there is greater need for palliative care now than ever before,” said Trivandrum Mayor K. Chandrika while inaugurating a one-day workshop for nursing students on 24th May, 2015 at Trivandrum. The workshop was organized by Pallium India in connection with International Nurses Day. Pallium India trustee, Dr C. Mohanan, also spoke on the occasion.

Every year, May 12 is observed as International Nurses Day to remember the role of nurses in the society, and to appreciate their commitment and devotion towards the well-being of patients. The theme of this year’s International Nurses Day was “A Force for Change: Care Effective, Cost Effective”.

Introduction to palliative care, communication, the role of nurses in palliative care field and challenges were some of the topics discussed in the workshop. Similar workshops have been planned in every district in Kerala over the coming months.

It’s amazing how little the developed world knows about the burden of pain and other suffering in the developing world and, much too often, it is the developed world that shapes global health policy.

We need to get the story of people’s suffering out there for others to hear. The Journal of Pain and Palliative Care Pharmacotherapy has such a feature. Write your narrative. Tell your story to the world. It is a peer-reviewed, indexed journal; but has a fast-track system for narratives. You can get published, quick.

You can see the heart-rending narratives from many parts of the world, stories of needless suffering, stories of how palliative care turned things around for patients with cancer pain, patients with post-traumatic pain and that of a bereaved daughter.

21 year old Lucy Watts has a genetic disorder called Ehlers-Danlos Syndrome. She cannot eat and gets food through a central venous catheter that goes straight into her bloodstream. She talked about how palliative care changed her life by giving her quality and meaning of life.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.